Rare genetic mutation impacting early intervention supports (Family or carer experience) | External submission

Submission 2771

Personal Submission

NDIS reform bill 2026

– Parent of NDIS participant (early intervention pathway)

Submission 2771

Who I am

I’m a parent of a child who receives early intervention supports through the NDIS. My daughter has a rare

genetic mutation with limited clinical understanding of prognosis or progression; medication can only allevi ate symptoms and does not cure the condition, and because the condition is chromosomal there are curre

ntly no gene-therapy optionsresearch into long-term treatments is limited. I live every day with the practic al realities of accessing plans, providers and supports that keep my child safe, developing and included in t

he community.

My connec-on to the issues

My family depends on NDIS funding for therapy. At present we do not use respite or community participation funding, nor are we funded for these supports. Without this funding, I would be forced out of

the workforce, my child has previously been excluded from childcare and community life due to the complexity and supports she requires within an environment, and our household would face severe

financial and emotional strain. I am a single mother who relies on the flexibility of her work schedule to be able to provide the care my daughter requires and financial support my family requires. Therapy has been

vital for my daughters growth and development; this has only been possible through early intervention. I see the consequences of policy changes in real time, 10% cuts to my daughter capacity building funding

will result in reduced intervention in the primary stages of her development. This could decrease her ongoing needs from the scheme if continued to be provided in the same intensity and frequency that we

have been currently funded at. I live every day with the practical realities of accessing plans, providers and

supports that keep my child safe, developing and included in the community.

Overall view of the Bill

I cannot support the Bill in its current form. It advances significant, irreversible changes with inadequate

consultation, weak clinical safeguards and no funded alternatives for supports. Thriving kids has not been trialled or even tested in the real world. Without this robust exploration of foundation supports, this bill

puts me daughter at significant risk. Rushed reforms will reduce participant choice and control, destabilise small and specialist providers which we rely on for family- and client- centred care we require as a family,

and shift costs and harms onto families and other public systems. Furthermore, the use of automation planning and assessment will try to categories a disability that does not fit one impairment level, resulting

in significant shortfalls in the supports my child will require into the future. Furthermore, the mistrial

powers for planning and funding decisions, should always lay outside the realms of the NDIA to provide

Submission 2771

transparency and safeguards for participants, this inclusion would result in neglect and categorised

removal of supports to groups of participants.

Main concerns

Loss of essential supports: Cuts to capacity-building and social participation remove the practical supports that keep my child safe, socially connected and progressing toward goals.
Loss of essential early intervention: A 10% reduction to capacity-building funding will reduce the intensity and frequency of therapy at a critical developmental stage, risking poorer long-term outcomes for my daughter.
Provider exits and reduced choice: Increased regulation, unfunded wage mandates and administrative burdens will force small and specialist providers out of the market, narrowing

options for families.

Ministerial powers to cut funding without clinical consideration: Granting ministers broad powers risks funding being removed from my daughter’s plan without regard for the functional implications

or an understanding of how this will affect her day-to-day safety, development and participation.

Forced shift from individualised care to group therapy: Policy or pricing changes that prioritise group therapy over individualised, client-centred interventions will expose my daughter to approaches that lack evidence for her rare condition and put her at risk of regression, particularly

during early developmental windows when intensive, tailored therapy is most effective.

No respite or community funding for my family: Because we are not funded for respite or social participation, cuts to capacity building directly threaten the supports we rely on to remain

employed and keep our family stable.

Delays and unsafe decision-making: Current review processes already take months; adding layers of oversight will not speed protection and will leave high-risk participants without timely responses.
Delega@on of clinical decisions and automa@on risks: Allowing unqualiﬁed staﬀ or automated systems to make assessments or plan decisions threatens safety and undermines clinical integrity for children with complex, rare condiSons.
Wider social impacts: Short-term savings will shiT costs to health, educaSon and child-protecSon systems and increase human harm rather than reduce fraud.

How this will impact us in real life

Reduced intensity of therapy: Ten percent cuts to capacity building will mean fewer sessions and less intensive intervenSon at a stage where progress is most achievable; this will likely increase my daughter’s long-term support needs.

Submission 2771

Loss of childcare and employment: Without consistent therapy and supports, my daughter risks exclusion from childcare; I will be forced to reduce or leave paid work, creaSng immediate ﬁnancial hardship.
Increased crisis risk: Less frequent therapy and fewer specialist providers will increase the likelihood of hospital presentaSons, carer burnout and involvement with child-protecSon services.
Slower developmental gains and risk of regression: The gains we have achieved through early intervenSon—improved communicaSon, self-feeding with adaptaSons, toilet training and

parScipaSon in adapted acSviSes—are fragile and require sustained, Smely support to conSnue; inappropriate subsStuSon with group programs risks regression.

No safety net for rare condi@ons: For children with rare chromosomal condiSons where medical cures are not available, early intervenSon is the only pracScal pathway to reduce disability and preserve family stability.
Immediate loss of routine and safety: My child’s weekly therapy, are not luxuries; they prevent crisis, enable medication management and allow both parents to work as she is able to access

mainstream kindergarten service. Removing these supports will increase carer burnout, reliance on the other partner to provide (despite us being a single parenting family).

Reduced independence and social inclusion: into the future I will not be able to access the required respite, from the caring burden associated to my daughters disability. The care

requirements of medication management, appointments, seizure plan implementation and

monitoring, ongoing individualised meeting for classroom adaptations on weekly therapy requirements, I am at an increased risk of burn out and these requires are beyond what would be

expected on a parent of a child who is typically developed. My daughter condition was not known to us pregnancy or early childhood. It is not something that we could have accounted or predicted

as her condition is de-novo, meaning first generation. We have made the adaptions, however without ongoing funding through the NDIS we are at risk of social exclusion and reduce capacity

building.

Financial and emotional strain on families: Cuts will force my family to choose between paid work and caregiving, increasing poverty and reducing family stability. Without consistent therapy and supports, my daughter risks exclusion from childcare; I will be forced to reduce or leave paid work,

creating immediate financial hardship for our family.

Slower progress and greater long-term costs: Fewer providers and less frequent sessions mean slower progress toward goals and greater long-term costs to health, education and welfare

systems. I choose to work with a smaller provider who can provide both the family- and client centred care. I require a team to adapt to her needs as they present. This is not possible in larger

organisation or group therapy situations.

Submission 2771

No alternative for chromosomal conditions: For children like mine, where medication only alleviates symptoms and no gene therapy exists, early intervention is essential to reduce disability and preserve family functioning.
Risk of regression: The developmental gains we have achieved—improved communication, self-feeding with adaptations, toilet training and participation in adapted activities—are fragile and

require sustained, timely, individualised support; inappropriate substitution with group programs risks regression

Before NDIS in 2024, my child had fewer than 25 words, could not self-feed or dress. She was not meeting

milestones of a typically developing child. She was not toilet train and could not participate in childcare due to behavioural and communication difficulties – use to spend more time at the centre assisting with

her management than I did with her receiving the support she required. My daughters father and I paid for services privately for a period however due to the intensity she was requiring it was costing us excess of

$600 a fortnight which was unsustainable, but necessary. With the therapy supports we now receive, she is

able communicate needs and wants, self-feed with adaptations, in the process of toilet training and recently rode an adapted bike with their sibling. These outcomes are the direct result of funded early

intervention during her critical developmental period. The NDIS has allowed my daughter to meet milestones and live a meaningful life, despite the limitation of her disability.

What I want the Commission to understand and my recommenda-ons

I ask the Committee to please consider my personal experiences when evaluating this, Bill. The lived evidence from families shows these supports prevent crisis, keep children safe and enable participation in

everyday life. For these reasons the Bill cannot progress as is. I recommend the Committee to:

Pause the Bill and delay progression unSl independent analysis and meaningful consultaSon are complete.
Protect exisSng supports: do not remove or reduce services currently accessed by parScipants unSl funded, operaSonal and proven alternaSves are in place, i.e. foundaSon or thriving kids state based

programs.

Prohibit ministerial funding cuts that ignore clinical impact: require clinical sign-oﬀ and a funcSonal impact assessment before any reducSon to an individual plan.
Preserve individualised, evidence-based care: ensure funding models do not mandate group therapy where individual therapy is clinically indicated and evidence-based for the parScipant.

Submission 2771

Introduce human safeguards for any AI tools used in planning so decisions are never acSoned without human clinical oversight and parScipant consent.
Require foundaSonal supports and correct implementaSon before removing exisSng services so no parScipant loses an established support unSl alternaSves are proven and operaSonal.

Final statement

Reform is necessary to protect the integrity of the NDIS, but from my lived experience as a single mother of a child who depends on early intervention, blanket cuts and rushed legislative change will do far more harm than good. I have watched small, steady gains—my daughter learning to communicate, self-feed with

adaptations, toilet train and participate in adapted activities—become possible only because of consistent, individualised therapy funded through the Scheme. A 10% cut to capacity-building funding, or ministerial

powers to make decisions regarding funding cuts or the implementation of automated decision making,

planning and impairment categories; would mean fewer sessions at the most critical stage of development, a real risk of regression for my daughter, and the very real prospect that I would be forced out of paid work

to provide full-time care. That loss of income would compound the emotional and financial strain on our household and push costs onto other public systems.

I ask the Committee to please consider my personal experiences when evaluating this, Bill. Decisions made

in Canberra translate directly into whether my child can access childcare, whether I can remain employed, and whether the fragile progress we have fought for is sustained. I urge you to pause this Bill until

independent, cross-portfolio analysis and meaningful consultation with families and clinicians are completed; to protect individualised, evidence-based supports for children with rare and complex

conditions; and to require clinical sign-off before any reduction to an individual plan.

If any Committee member would like to see the real-world impact of these services, I invite you to spend a day with me. Seeing my daughter’s progress and meeting the families and clinicians who support her will

show why rushed cuts are not the solution. Please contact me to arrange a visit or to discuss these concerns further.